Ella Grace Race aims to educate about disease

Shena Mintz survived a nightmare no mother wants to deal with when she lost her firstborn child to Polycystic Kidney Disease 18 hours after her birth on Jan. 24, 2012.

By Emily WeaverTimes-News Staff Writer

Shena Mintz survived a nightmare no mother wants to deal with when she lost her firstborn child to Polycystic Kidney Disease 18 hours after her birth on Jan. 24, 2012.The memory of that day made Mintz become an advocate for several causes. Nearly $125,000 has been raised in her daughter's memory since then for the PKD (Polycystic Kidney Disease) Foundation, Mountain View Baptist in Tuxedo and the neonatal intensive care unit at Greenville Memorial Hospital in South Carolina.The couple hopes to educate the public about PKD and help find a cure. With the second "Ella Grace Race to end PKD" on Saturday, Mintz has several reasons to look ahead with joy and hope.Shena Mintz is five months pregnant. She learned the news on May 20. A few weeks ago, she and her husband, Sean, found out that they are expecting another girl, who is estimated to arrive a day before Ella Grace would have turned 2.Ella Grace Mintz died from infantile autosomal recessive kidney disease — a rare genetic disease that causes cysts to form in the kidneys and delays development of the lungs. There is a 25 percent chance that their new baby may also be born with PKD, but the Mintzes are focused on the 75 percent chance she won't."So far everything looks good," Shena Mintz said. "We've done some genetic testing and hopefully this baby won't have the PKD... We have a good strong faith that's getting us through."Losing their first child was a kind of heartbreak that never really went away, a pain that's hard for Sean Mintz to even talk about.But having a new baby so close to her birthday, "I think it will help us not be sad on that day," Shena Mintz said. "We try to make the best of it and be positive, but it will still just be special because it will be close to Ella's birthday."Although they haven't chosen a name for their baby, the couple have faith this time will be different. "We're just excited and blessed. We put it all in God's hands," Shena Mintz said.Last year, nearly 500 people attended the inaugural Ella Grace Race and raised close to $17,000 for the PKD Foundation.This year's 5K run, walk or crawl will kick off at 9 a.m. at the Saluda Party Place and Event Center, formerly Saluda Jamboree. It will follow the route of the Coon Dog Day 5K.Sean Mintz said they hope the public will join them in raising money and awareness to find a cure. Participants can register for the race before the event online at www.imathlete.com with a keyword search of "Ella Grace Race." A $20 registration fee and other donations raised from the event will be given to the PKD Foundation in Ella Grace's memory.Pre-race registration will also be available at the event center from 7:30 a.m. to 8:45 a.m. For more information about the event, visit "2nd Annual Ella Grace Race" on Facebook.Reach Weaver at emily.weaver@blueridgenow.com or 828-694-7867.